Have you had any negative experiences with real world support group(s)? Explain.

2. n/a
3. Nothing serious, as with life personalities don't always mesh well.
4. N/A
5. I have not joined any real world support groups due to time constraints.
6. None, except it is distressing to have the group leader start a session by anouncing the passing of former attendess that we have gotten to know.
7. na
8. N?A
10. I was speaking with a brain tumor patient and her cognitive functioning was impacted by the surgery and treatments. I explained that my husband also has trouble finding the right words sometimes even though his was located on the right temporal lobe and not the left like that for those I was speaking with. They had indicated that the left temporal lobe affects speech, thoughts, etc. I was simply making a statement of fact based on observation that in no way was intended to put my husband down. The lady proceeded to defend him by saying that any time they start cutting things out of your brain, that could happen! I felt she misunderstood me and did not want to compound the issue by trying to explain myself further. I will now simply LISTEN to the patients and converse more with the caregivers.
11. Yes. See #45
12. N/A
13. Only that I could never find one that we were able to get to, even though we live in a major suburb of Washington, D.C.
14. N/A
15. No
16. N/A
17. very confronting to see very sick people when not at that stage
18. No
20. n/a
22. n/a
23. I went to one meeting. The Drs that talked went over everyone's head. I wish they had just answered peoples questions
24. no
26. n/a
27. not really
29. no
31. N/A
32. na
33. not applicable
34. the real world brain tumor group combine those with benign tumors and those who had curative surgery, there really was not a connection with someone who had an inoperable tumor like my husband...there was no support in that group for us
35. NA
36. No
37. N/A
38. N/A
40. n/a
41. overwhelming, same as with online, especially with people that conciously or unconsiously dominate the group with their own issues.
43. No... other than the same mentioned above. It's difficult to see other BT patients declining and then passing away.
44. N/A
45. none
46. Nope
47. We have one local support group here in St LOuis and people there are not educated about the brain tumor world at all. They listen to their doctors and do not loook else where for traetment. I have suggested the online support group to many people in the group as well as mentioned the online resources.
49. NOPE
51. n/a
52. Yes. Sometimes people come to support groups looking for answers in others that they really need to find in themselves. These people get frustrated and tend to act out in the groups. These people are troubling and troubled, but sometimes they come, after some time, to change their attitudes. As for me, it is my responsibility to help if I can and to do no harm.
53. Not really.
54. n /a
55. n/a
56. In our local support group it was made up of only low grade bt's. They had little or no hope for GBM patients so we opted to avoid the negativity or looks of pity that were apparent on the face of the support group leader and some patients.
57. n/a
61. After about a year or so I was one of only two of the original group members who were still able to attend the group. I found that quite depressing and felt guilty that I was doing so well and going bck to work.
62. N?A
63. NO
66. N/A
68. N/A
70. N/A
71. No
72. NA
73. Not Joined.
74. I went twice and found it way too depressing
77. N/A
78. no
79. AS above I do not get alot of help from live group discussions. I tried group theraphy once and hated that also. Maybe its just me.
80. N/A
81. NO
82. no
83. n/a
84. General groups for all ages; adults have different types of problems.
85. n/a
86. N/A - Same as above
87. Yes. I cannot attend my local"caregivers" support group since I work during the day. We have attended 2 different support groups that are for the person with cancer and their family members/friends.One of these groups is more aware of different needs of caregivers and the person with cancer and the facilitators handle this challenge better.In the other, I felt like uncomfortable when us "caregivers' were being complained about.
88. n/a
90. no
91. n/a
93. no
94. No
95. No only positive experiences.
96. sometimes the questions are very repetative. Also, there needs to be more medical professionals attending these groups, so that they can share thoughts
97. no
98. Have not gone for first meeting yet. Going to first meeting in September.
99. You loose friends that you made...over months
101. None
102. No - only losing people you grow close to.
103. The first group I went to focused on the losses and was too depressing. It was also difficult for me to travel alone, at night, further away. But, our groups are connected and still share info.
104. No, other than to witness the death of some people that are younger than my children. This is extremely sad.
105. n/a
107. N/A
108. n/a
109. no
116. n/a
117. No.
118. No not really applicable because I am unable to drive to attend the support groups.
120. n/a
121. no
122. See above.
123. Have never been
124. none
125. Occasionally, one or two people may tend to monopolize conversations. This is usually handled by the facilitators and not a big problem.
126. N/A
127. Sometimes they reduce to jest "listen to my story/stories. Therefore, they might not be very educational in those cases. They are good for the emotional component of those involved, of course.
129. n/a
130. N/A
132. no
133. N/A
134. n/a
136. no
137. Yes. The 1 support group that I participated in has been very disappointing. No one ever talks about feelings, only info regarding medication/treatment is discussed. Also no one has ever inquired about benign tumors. It's as if having a malignant tumor is what the group is about. I did bring it up to the leader and I wasn't too happy with the conversation.
139. no
140. N/A
142. N/A
143. N/A
144. N/A
148. NA
149. Not applicable. See above.
150. n/a
151. N/A
152. /
155. haven't used
156. na
157. I do not have any real world support groups in my area. If there was one, I would have difficulty attending as I am my husband's primary caregiver - He cannot stay alone and I have no one to watch him.
160. no
163. no
164. n/a
167. Have never found any close to home.
168. none
170. n/a
171. n/a
172. no
173. No.
174. We tried one group but the people there weren't as knowledgable as the people in the brain-temozolomide group.. it was a waste of our time.
175. Not Applicable.
176. n/a
177. N/A
179. None
180. NA
181. not applicable
182. no
183. n/a
184. n/a
185. na
186. N/A
187. No
188. No.
189. N/A
191. There should be more specialized groups. There wasnt one in my city for Younger patients so I felt a bit akward.
192. n/a
193. No
194. no
196. Have not joined any real world groups.
197. SAME AS ABOVE
198. have not participated with any--can't deal with all of the stress
199. N/A
201. n/a
202. N/A.
204. N/A
206. No
207. There are not always a lot of brain tumor kids here.
210. N/A
211. None
213. N/A
217. I have not been in any support groop's
218. no
220. N/A
222. not yet
223. Not Applicable
224. same as above.
225. NA
227. Overly directed by professionals. No opportunity for survivor facilitation. No opportunity for interaction with Docs on basis of equality. Little visible opportunity to tell stories where they may count most - with docs. Many suooort groups are supported by pharmaceutical cos. Little opportunity to develop shared critical perspectives.
229. -----------------------------------------------
230. early on too much "misery loves company" so we avoided them
232. Not applicable
235. Not in one.